Boston

It has been a really long day. I was on the road from mom & dad’s at 4:35am this morning to drive to Boston to pick Dan up from the airport. He was up at the same time as me for his flight. We then proceeded to the hospital to meet with the lung specialist. All I can say is I don’t understand why someone would choose to live in a place with all that traffic.

I was so afraid we were doing this for nothing, but the doctor was really thorough and I have hope even though today was mostly history/fact gathering. Minimally, she’s got a plan for another medication that will have the same effect on my lungs as prednisone without the side effects. That would be awesome. I can’t stand how the steroids make me feel and the weight gain is awful. I don’t feel like myself. So I’m really hoping this works.

She sent me for bloodwork and they took 13 vials!! Unfortunately some of the tests she ran won’t come back for a couple weeks and during that time she’s planning on presenting my case to the team of doctors focused on ILD. Then we’ll have a virtual appointment where I hope she’ll have some new ideas. 

We then headed back home. 14 hours of travel for both of us!! Long day, but maybe the start of a new plan?

Bad Assumptions

Before reading this, please know that all is well. I’m still ‘stable and unremarkable’ so no cause for concern. But I learned some interesting stuff yesterday so I’m sharing.

I had my quarterly scans on 8/19 and the results I saw on the portal concerned me as it read like I have extensive active disease, but then ended with ‘no change since the may scans’ so how is it so bad now? I decided to stay quiet and wait until my appointment on Monday. 

Normally I speak to the doctor after a scan, but this time I met with the PA who walked in the room and said ‘ your scans were good’ in a chipper voice. I told her I didn’t think so and started asking questions. The doctor told me that often scar tissue looks the same as disease and that there was 1 active tumor they were watching in my liver. The response of the PA was that active is defined differently. They consider a tumor active if it is doing something like growing. That is not my definition of active. If it is not active, it should be dead in my world. So that was sobering. I need to be more assertive to make sure I really understand the results of my scans.

Then I handed her my ‘do not resuscitate’ form. Again, no worries… this is just to have on file. She said she agreed with my decision not to be intubated because they typically do not extubate someone in my situation. Yikes!! So intubation equals vegetable until death? No thanks. That might explain why the doctor was so concerned with my first hospitalization when my oxygen levels were so low. I didn’t understand the issue at the time. So now I’m really glad I refused intubation then and now I’ll never be intubated.

This whole situation is as much mental as it is physical. I really need to keep my head in check and not think about it. I try to fill my mind with visions of hiking and sitting on the beach. 

2nd Cataract Surgery

I finally had my 2nd cataract surgery on Friday. All went well. A month of wonky eyes was too much. At least now they are the same, although I’ve got to figure out the reader situation. I think I need glasses where there is no script on top so I can just wear them all the time. On and off all day long is annoying. No more contacts or glasses that make my eyes look small!

I also got an appointment at a hospital in Boston with a doctor who specializes in lungs. Originally the appointment wasn’t until March, but they called this week with an appointment in September. Woot woot. I need to hear from an expert that there is really nothing more that can be done to improve my breathing. I don’t have a lot of faith in my current pulmonologist. But I did with the last one and he said the same thing…I have scar tissue from previous treatments and it is there to stay.  I really don’t want to accept that as it is what impacts my quality of life the most. So I’ll push a little harder to be confident I’ve done all I can.

We decided we needed a relaxing day yesterday so Dan drove me to the finger lakes to check out a couple of wineries. What a beautiful day it was with my favorite person. Take advantage of all the minutes.

Cataract Surgery

I had my right eye done today. And things are weird. I can tell I’ll be able to see distance clearly out of that eye, but the surgery on the left eye isn’t for a month so things are wonky right now. The doctor has suggested that I wear a contact in the left eye, but I’m not a huge fan as contacts dry my eyes out so I may have the right lens removed from my glasses which will be so very attractive. I’m more concerned about comfort than how I look. Hopefully I can navigate things so I can function.

I don’t know what my close up vision is going to be like. I think I need some time for things to settle down. Dan says my eye is still dilated so maybe that is why I still can’t see.

I might be looking forward to shopping for funky readers. Maybe some bright colors or animal prints or clear frames. Oh and I’ll be able to wear real sunglasses…and see the clock in the middle of the night? Maybe I’ve finally gotten a positive impact from a side effect of treatment. Maybe.

Another day, another experience. Some days I wish I could be Lucy.

Always ahead of my time…

Yes, I’m always ahead of everyone else when it comes to medical issues. Breast cancer, shingles, hip replacement, and more all before 50. And, to keep up with myself, now I have cataracts at age 50. Good times.

I noticed I was struggling with my vision recently, but thought it was because my eyes were watering. About 2 weeks ago, I realized the vision in my right eye was blurry, like there was a film over it. I had an MRI to rule out disease as a root cause. Luckily there is nothing in my brain. Yup, nothing there ear to ear! That explains some other things, but not the vision issue so off to the eye doctor I went.

I suspected a steroid induced cataract after my extensive medical studies and after a bunch of tests, cataracts in both eyes was confirmed by a real medical professional. I’m relieved as there is a fix!!! And the doctor says I’ll come out of it without thick glasses. Woot woot!! 

First I need to see a retina specialist to see if there is anything they need to do to stabilize my retina as they’re thin. Then I’ll have a surgery for each eye sometime in the next month. I’m actually looking forward to it.

It really is always something in my world. These treatment side effects are the worst. At least this is fixable.

Catching Up

Life has been crazy lately. Normal, non-cancer,

life. I consider that good!  Work is nutty, baseball is in full swing and Ryan is still in school. Run, run, run. Normal.

On the disease front, I’ve continued my recovery from the April hospitalization. Still weaning off steroids. I’m going down to 20mg tomorrow and then I’ll be back at my 10mg baseline in two weeks. I certainly hope to find my face again under all this puff. And maybe stop needing to eat all the time. I really enjoy food!

I had scans a few weeks ago and the good news is that there is only 1 active tumor in my liver that they are watching. Woot woot!! I’m considered stable and unremarkable. But fragile. Now there’s a word rarely used to describe me!

My lungs are what really impacts my quality of life so I’ve been pushing my team on that. The next step is a second opinion in Cleveland or Boston. I intend to pursue that. Soon. When normal life subsides just a little.

How wonderful it is to be engrossed in normal.

Interstitial Lung Disease (ILD)

Before today, I wasn’t familiar with the term Interstitial Lung Disease, but I am now! 

I had requested to meet with my oncologist to discuss the pros and cons of a treatment change to positively impact my lungs as I’m sick of being sick or fearing getting sick so I’m missing out on the things I’m fighting to live for. We had that appointment today.

He reiterated that my pneumonitis is treatment related and not disease related plus confirmed that they did not find cancer cells in my bronchoscopy. However, he also stated that it was previous treatment that put me where I’m at. My current treatment isn’t helping or hurting my lungs. And it is effective on the disease so he is not supportive of a change while it it working. Ugh. But, I get it.

So then we talked about ILD and looking at it as a separate condition with potential treatment dedicated to it. That sounds interesting!! Unfortunately this is not an area of expertise for my oncologist so he is going to consult with my pulmonologist and his colleagues in Boston.

The good news is he understands my position and wants to help me find a way to not be so fragile. I’d like to be reliable and be able to make plans that I can count on plus be able to attend the important events without the likelihood that I’ll end up sick for months.

I’m hoping there is a reason for a trip to Boston soon!